#SaludTues Tweetchat 1p ET 1/4/22: “Raising Awareness for Cervical Cancer”

We are pleased to participate in the #SaludTues chat on "Raising Awareness for Cervical Cancer" with  @IamCervivor, @NFIDvaccines, @StopHPVCancer, @latinxvocesllc, @UTHealthSAMDA . 

Via #SaludTues:

Each year, more than 14,000 people are diagnosed with cervical cancer. The cancer is especially hurting communities of color, with Latinas at a high risk of diagnosis. But cervical cancer is preventable . 

Stopping cervical cancer for Latinas and all communities means equitable education about the causes, prevention and treatment of HPV and cervical cancer . 

Join #SaludTues on Jan. 4,2022 at 1:00PM EST to tweet about how we can stop cervical cancer in celebration of Cervical Cancer Awareness Month.

• What: #SaludTues Tweetchat "Raising Awareness for Cervical Cancer
• Date: Tuesday Jan. 4, 2022 
• Time " 1:00-2:00 PM EST ( 10-11 am PST) 
• Where: on Twitter using #SaludTues
• Host: @SaludAmerica
• Co-Hosts: @IamCervivor @NFIDvaccines @StopHPVCancer @latinxvocesllc @UTHealthSAMD

We will open the floor to data, resources and your experiences as we explore: 

• How cervical cancer is caused ,screened and treated
• What we can do to address the stigma and misinformation around HPV and cervical cancer
• What resources are available to cervical cancer patients and survivors

Learn more about Salud at  https://salud-america.org/

Learn more about #SaludTues chats at https://salud-america.org/tweetchats/

Link: https://salud-america.org/saludtues-tweetchat-raising-awareness-for-cervical-cancer/

See you in the New Year! 

Dee and Christina

Dec. 8, 2021 Surviving Holiday Stress

For the last chat of 2021 we discussed Surviving Holiday Stress. Online resources and advice were shared by participants to help with the challenges of celebrating holidays as a cancer patient/survivor. You may find the transcript here and the analytics here. 

Below is a summary of the topic questions and answers . 

T1: What do you look forward to during the winter holidays? What traditions bring you comfort and/or joy?

• I continued the tradition I had growing up where each child picks out a new ornament for the tree each year. We also have 2 different advent calendars - one from my childhood - that we all enjoy. Watching ELF and the original Miracle on 34th Street are also a must. :)
• My favorite holiday traditions are time with my people, our annual homemade gifts, baking, music, and holiday light tours.
• I love baking cookies that I used to eat growing up. And I love decorating the tree. Every ornament has a story - a trip , event or from when my kids were growing up.
• I also love to attend a Christmas Eve candlelight service with my husband and kids before heading off to celebrate with extended family. Some peace before the bustle. 

T2: How can a major diagnosis impact your experience of the holidays and your traditions? Does this change over time?

• per @SHAREing expectations of being or looking like the person you were before your diagnosis can have an impact on your decision to attend gatherings or on your interactions during gatherings. Financial strain can also make gift giving an added source of stress.
• When getting chemotherapy treatment I didn’t have time for things or was so tired I could do the things if I wanted to. So was a tough to adjust at first.
• I also talk with clients about giving themselves permission—and explaining to others—to need something completely different than previous years. Sometimes, it is okay to let a tradition lapse.
• Some people may just need to have a caregiver say - It's OK to not - bake dozens of cookies or buy all the gifts or put every decoration out. 
• per @CancerHopeNet a great strategy is to simplify - get to the core of what matters to you - but also plan for how cancer may interrupt your celebrations. They also remind us all to check on caregivers and their needs over the holidays.
• If you have a holiday tradition you'd like to participate in please talk with you healthcare team. You may be able to reschedule to allow a short treatment break so you don't miss important times with your family. #LittleBigThings
• And some caregivers need a support person who is reminding _them_ that it is “okay to not” as well

T3: What are some things you changed about how you celebrated when you/your loved one were first diagnosed? What are some tips for those celebrating while in active treatment?

• Similar to the last topic, I encourage people to focus on their top priorities, and let some of the rest fall to the side. Maybe you do less baking, fewer cards, less running. That’s all okay
• For the holidays, @power4patients suggests: 1) Know your limits and rest when you need to. 2) Allow extra time for preparing for travel or a get together - especially med prep. 3) Be conscious of foods you don't normally consume.
• I picked out only 2 cookies to make (instead of 5), I had family help set up and put the lights on the tree. Which left me with what I love adding ornaments. I asked my husband to do the shopping for gifts.
• Another reality is that, if you are in active treatment and physically miserable, the traditions may need to take a backseat. If needed, give yourself permission to have Christmas in February or Hanukkah in March.
• In 2011 I wrote this - Advice from Holidays Past https://womenofteal.blogspot.com/2011/11/advice-from-my-christmas-past.html with some tips.

T4: How can you manage relationships when you feel like you are expected to fulfill all your "usual" roles during the holidays? What can you do ahead of time to set expectations?

• In some ways it is so much easier to just do what we always do... but talking about things - even hard things - can end up being rewarding. Maybe someone else in the family has always wanted to help do or try something but no one's ever asked. :) 
• I encourage patients and caregivers to be willing to set aside “usual.” To talk to one another and key family members about most important goals/priorities and to say up front that things can be both different AND good.
• We downsized everything - room-sized tree, modified versions of activities or holiday shows to keep the spirit while recognizing my MIL’s limitations. #gyncsm #caregiver
• In this article, @cancerhopenet suggests sending a letter/cancer update so you don't have to keep repeating yourself and to be able to just set some clear expectations about how you can celebrate and what you do/don't want to talk about. #gyncsm https://blog.cancerhopenetwork.org/2021/11/03/surviving-the-holidays/
• I gently remind folks that it is wildly unfair to expect themselves to navigate the holidays as if they didn’t have cancer. They don’t have to like it, but the cancer is there. Holidays with different expectations can be way more fun than holidays with exhaustion.
• It is hard to ask for help but sharing with loved ones that you might need help with things ahead of time will make it easier.Telling them which festivities are top of your list can help them let others know your situation
• Women are notoriously bad at asking for help. Everyone who loves someone with a gynecologic cancer this holiday - please ask, offer, ask, insist on helping. #gyncsm #LittleActsofKindness
• This is a place where family and loved ones have a role. “Let me know how I can help” may mean leading the charge to scale back or modify traditions. Or being the one to champion your loved one’s need for rest. Take the hard convos off their plate. 

T5: How do you feel about starting new traditions and letting go of others? How will this year be different for you?

• I love the hope and possibility of a new tradition. There are some chores that we hang on to because “we’ve always done it” not because we love them. A forced re-evaluation can make room for something beautiful to grow.
• Even if you stopped treatment a few months before, you still might not have the energy to "do it all".
• Traditions ground and connect us to our past, so letting go can be hard. Being sad about that is okay. Mixed feelings are to be expected. Traditions can morph and change over time and new ones can bring joy too - while still finding ways to honor the past.
• It was hard that first year but the next year holiday season I was – “I don’t need to do that this year either” So the new traditions were OK. 
• We stopped doing gifts for the 18+ several years back and started doing charity donations instead. Some small gifting has crept back in but, all in all, it is way less stressful. Sometimes a change of pace is just what everyone needs.
• @americancancer has this great article Handling a Serious Illness Through the Holidays During the COVID-19 Pandemic https://www.cancer.org/latest-news/handling-a-serious-illness-during-the-holidays.html

T6: What are some tips for being more mindful or "in-the-moment" as you celebrate? How can you re-center if things get overwhelming?

• https://www.hopkinsmedicine.org/health/wellness-and-prevention/4-mindful-tips-to-destress-this-holiday-season 1) Accept Imperfection. Can good be good enough? 2) Where does this fit in the grand scheme? Can I use this moment of frustration as an opportunity to reflect or find a way to make it pleasant? 3) Take a deep breath and respond w/kindness, 
• I think I've gotten better about listening to my body and asking for what I need. I can better sense my anxiety creeping in and have gotten better about speaking up.
• For me- If we were visiting others I would ask ahead of time if they had a spot I could lay down if I needed too during the festivities. I did take advantage of it a few times and felt refreshed when I returned to the group.
• I appreciate these tips on "Protecting Your Mental Health During the Holidays" from @afspnational: https://afsp.org/story/from-thanksgiving-to-new-year-s-protecting-your-mental-health-during-the-holidays Get outside during daylight hours. Take a risk and connect if you are feeling lonely. Do at least 1 thing to improve your sleep this season. (1/3)
• (2/3) continued... Take breaks. Remove something from your holiday “to do” list. Find a balance between being w/ others and being alone. Find the choices w/in the obligations (assuming you can’t avoid them entirely). Prioritize activities that support your mental health
• (3/) continued... They also suggest rehearsing a few phrases to help you answer various lines of questions that might come up like: “I’d rather not discuss that today/here.” “I don’t know how to respond to that.” “I’ll have to think about that and get back to you.”
• @cancercare has good advice in Coping with cancer during the Holidays https://www.cancercare.org/publications/55-coping_with_cancer_during_the_holidays 

Please see Resources below. 

Note there will be no #gyncsm chat in January 2022. 

Save the Date for our next chat on February 9, 2022 at 8pmET on “Finding Emotional Support”.

In January, you can join  #gyncsm @iamcervivor and more for a #SaludTues chat during #CervicalCancer Awareness Month on Tuesday, January 4, 2022 at 1pmET .

We hope peace and light are with you through the winter holidays. We look forward to chatting with you in 2022!

Dee and Christina

RESOURCES 

Coping with cancer during the Holidays https://www.cancercare.org/publications/55-coping_with_cancer_during_the_holidays 

From Thanksgiving to New Years Protecting Your Mental Health During the Holidays https://afsp.org/story/from-thanksgiving-to-new-year-s-protecting-your-mental-health-during-the-holidays

4 Mindful Tips to Destress This Holiday Season https://www.hopkinsmedicine.org/health/wellness-and-prevention/4-mindful-tips-to-destress-this-holiday-season 

Handling a Serious Illness Through the Holidays During the COVID-19 Pandemic https://www.cancer.org/latest-news/handling-a-serious-illness-during-the-holidays.html

Surviving the Holidays https://blog.cancerhopenetwork.org/2021/11/03/surviving-the-holidays

Let's Talk About it : Ovarian Cancer   The Power of Traditions

https://www.sharecancersupport.org/lets-talk-about-it-ovarian-cancer-the-power-of-traditions/

Advice from Holidays Past https://womenofteal.blogspot.com/2011/11/advice-from-my-christmas-past.html 

Surviving Holiday Stress #gyncsm December 8, 2021

 

The holidays are a busy time for everyone. There are religious celebrations, getting together with family and friends, traveling, shopping for gifts, decorating, and food preparation. Being newly diagnosed with cancer, in active treatment, or during the survivorship stage adds to an already hectic schedule. You may have to juggle family obligations with a treatment schedule, adjust how you celebrate due to treatment side effects, and/or balance gift purchases with the financial burdens of cancer treatment. Join the #gyncsm community as we discuss the impact the holidays have on those impacted by cancer this Wednesday, December 8, 2021 at 8pm ET during our Surviving Holiday Stress chat.  

We will talk about the challenges and discuss ways to cope and make those special gatherings with family and friends more meaningful and less stressful.

T1: What do you look forward to during the winter holidays? What traditions bring you comfort and/or joy?

T2: How can a major diagnosis impact your experience of the holidays and your traditions? Does this change over time?

T3: What are some things you changed about how you celebrated when you/your loved one were first diagnosed? What are some tips for those celebrating while in active treatment?

T4: How can you manage relationships when you feel like you are expected to fulfill all your "usual" roles during the holidays? What can you do ahead of time to set expectations?

T5: How do you feel about starting new traditions and letting go of others? How will this year be different for you?

T6: What are some tips for being more mindful or "in-the-moment" as you celebrate? How can you re-center if things get overwhelming?

 

We look forward to seeing you on the 8th!

Dee and Christina
#gyncsm Co-founders

Nov 10, 2021 Chat - Talking to Family and Friends about Cancer and Cancer Risk

We were so happy that Dr Anne Becker-Schutte was able to join twenty-three participants for this robust conversation about Talking to Family and Friends about Cancer and Cancer Risk. You may find the transcript here and the analytics here. 

 

Here is a summary of the responses to our topic questions. 

T1: After a diagnosis, telling family and friends can be overwhelming. What are some considerations for deciding what information to share, with whom to share it, and when? What are some tips for those early discussions?

• I recommend that, whenever possible, a patient facing a new cancer diagnosis have at least one trusted person with them at the first appointment, so they have extra ears & a note-taker. 
• After you take a moment to breathe and digest the information, I encourage direct communication (phone, video, in person) with your most important support people.
•  If you are a person who processes well in writing, make some notes and consider using a tool like a social media group or CaringBridge page to distribute general information to a larger group (if you have someone who can be in charge of that job, that can be great). 
• And with kids, you know them best. Most kids will ask for more information if they can handle more. But don’t try to hide it—kids are perceptive. 
•  It is likely that you will have some shock. Ideally, you will have at least one key support person who can help you hold space and sort out the “who needs to know what” logistics. If not, there are always professional helpers.
• Ultimately, it is your decision to share how little or as much as you would like. People generally mean well but may not know how to process the unexpected nature of a cancer diagnosis. It is important to know it's your story to share & no one can take that from you. 
• A1: follow your heart. Let people know what you are comfortable talking about. Talk with your partner about what you are willing to let others do for you

T2: What are some ways to handle the variety of responses and reactions when sharing about one's cancer diagnosis, treatments, and/or experiences?

• Everyone processes things differently. It's easy to take things personally, however, their response may have nothing to do w/you. If you find it too difficult w/certain people, limit your interactions/information shared. Talk to a therapist to help with processing too.
• A sad reality is that some who were very close will react by pulling away from the diagnosed person. This is so hard, but know that this is common and others will often step in and surprise you. 
• I often talk with clients who are struggling with the reactions of others. Some folks pull away. Some folks say insensitive things. Some folks appear to expect you to solve their discomfort over your diagnosis. 
• I second the suggestion to remember that others are responding to their own issues, even if it feels like responding to you. During diagnosis and treatment, you need to center your energy on your health and your family. 
• I love that card about "When life gives you lemons, I will not tell you about my friend that died of lemons". Others often don't know what to say and go in weird and hurtful directions.
• T2 sometimes it’s easier to talk to strangers in a support group who are going thru or have gone thru your journey
• Yes! A well-run support group (or a space like #gyncsm) can be a huge support because you have that shared experience.
• A2: I had to be very clear about my main agenda in contacting family members. It wasn’t for support or validation. I’d just tested + for BRCA2 and getting word out to fam was my overriding concern.

T3: What advice would you offer to friends and family when talking to their loved one about cancer? What have you found MOST helpful? What tends to be NOT helpful at all?

• The first thing I encourage family and friends to do is to avoid trying to say the exact right thing. 
• In fact, I think that one of the most connecting, caring things you can say if someone shares a diagnosis is, “I am so sorry to hear that. I don’t know exactly what to say, but I want you to know that I am here.” 
• I also encourage folks to offer a specific type of help. “I will come over on Tuesdays to take the kids to the park. I will walk your dog. I will be there Thursday to run some laundry.” Asking a person who is in treatment what they need can actually create a burden. 
• Another suggestion I offer to friends and family is to just say, “Tell me if you need me to be cheerful or to just be with you and share the sadness together.” No feeling needs to be solved. Feelings just need acknowledgment & space. 
• A3: I sometimes point friends and family members to the “ring theory” of responding to tough situations: Comfort in (towards the person who is ill). Dump (your fear, etc) out—to the rest of your support network.
• I feel something like "I don't know what to say. This is hard." can go a long way vs. trying to say the perfect thing and making it worse and/or not saying anything because so worried. 
• T3 listen. Ask if you can do errands or chores. Drive to treatment. Wash their hair! 
• Support is everything. Please don't listen to respond. Listen to listen and provide advice only when asked. Most of us just need someone to hear us. If you are unable to support us, encourage support groups either virtually or at a local infusion center.
• Love the asking what they are looking for. Sometimes want to talk cancer. Sometimes want to talk anything but cancer. 
• t3: Show Up. 
• T3 NOT helpful. "So do you trust what the doctor is telling you? "or " So what caused the cancer?" ( heck if I knew that I'd get the Nobel Prize.) " Oh that's a bad one my Aunt... Sister..., Neighbor had that ."
• Listen to listen, not to respond.

T4: Many of us struggle with how to ask for and accept help and support. How can we best communicate what we need to friends and family when feeling overwhelmed?

• For some of my clients, it helps to have a list of the stuff that needs to be done (housework, kids, doctor visits), and allow people who offer help to just choose from the list.
• I also remind patients that friends and family members can’t take away the cancer, but often are desperate to do something. Offering a concrete need is actually helping the helper.
• And sometimes we all need the reminder that accepting help is not a failure. It is part of the human experience. I suspect my aunt may have lived longer if she had been able to rest and accept help.
• A4: The best advice: keep a journal. Write down anything & everything. If you want to talk to someone, ask for a referral from your provider's office. Sometimes you don't know you need help until you're in the process. Remember, healing is not linear.
• When people w cancer seek & receive help from others, they often find it easier to cope. When you accept help from your loved ones you are allowing them to feel connected to you during a time that they really need to express how much they care about you 
• Those who care about you won’t know how to best support you & may say “let me know how I can help”. This is a great opportunity to tell them in specific way what they can do to be helpful. It’s important for you and it’s important for them to allow this to happen 
• This is so hard to do when you are tired, overwhelmed, brainfogged. It’s good to make a list, like in Google docs or something, and share it 

T5: For genetic testing, what are some considerations when it comes to sharing the results with family? Are there resources for how to reach out and for handling their reactions and questions?

• A5: My first consideration would be to think about what I hope others would share with me. I want to know if I have elevated genetic risk. It’s why I pay attention to my cardiac health.
  
• My aunt called me and then sent a follow-up email with information from her genetic counselor. It was good to have things to look at and research when I was ready after that initial conversation. 
• genetic testing results have implications for you & your medical care, but also the cancer risk & medical recommendations for relatives ... #HereditaryCancer
• Every family dynamic is different, so what works in one family might not in another - across the board, we recommend that genetic test results are shared with family members, especially if a gene mutation is detected, as relatives may have inherited higher cancer risks
• Some families will share genetic test results w/ relatives at gatherings (holidays/reunions), some have phone calls, send information to relatives by letter, or invite relatives to join them in a genetic counseling visit #gyncsm Getting the info out is a huge & important 1st step
• Resources to help w/ sharing genetic test results are available through orgs like @FacingOurRisk & others. A genetic counselor can also help you think though different strategies & answer questions that you may get from relatives.@GeneticCouns has info & how to find a GC 
• T5 I made sure to ask first before I shared my results with close family members. Some relatives didn’t want to talk about it. When they were ready we did have the discussion. 
• Organizations like @FacingOurRisk @CancerDotNet @GeneticCouns have resources for sharing genetic results with relatives.
• T5. I felt it was so important to share with my family. My doctor helped me with the info to share
• T5 One other issue that a lot of us faced with genetic testing was being told by family and others that it’s “so good you couldn’t have kids to pass that on.” Goes along with the it’s less sad when we die without kids
• I discussed outreach strategy with my genetic counselor and a peer navigator at FORCE. I knew that, for myself, receiving a form letter about my genetic test results would have turned me off. I would prefer a more personal, one-on-one approach, so that’s what I used 

T6: What are some tips and resources for guiding end of life discussions and planning with friends and family?

• I like encouraging folks to explore tools like National Healthcare Decision Day or the toolkit at the Center for Practical Bioethics to begin thinking about how to have these conversations.
• I remind my clients that their discussions and decisions are ultimately their own. These can be guided by family values, religious/spiritual values, etc. but should ultimately reflect your values. 
• When I worked as a hospital social worker, we shared resources like Death With Dignity: https://deathwithdignity.org/learn/end-of-life-resources/ 
• They are tough conversations, which is why I have advocated for folks to have these conversations with loved ones long before there is any diagnosis. It’s a regular discussion at my house.
• I also remind clients that making clear plans about your desired end of life healthcare decisions, burial/cremation arrangements, ceremony or celebration is a gift to those left behind. (Also, having a central location for key paperwork).
• It can start when making out an advanced directive and health proxy. Be honest with loved ones about our wishes. As family members, we have to be willing to listen to what our loved one wishes and not place our ideas on how they should be coping.
• 1/3: talking about end of life can be difficult but having open and honest communication with your family will create emotional connection at a time when it is needed most. It is natural to want to protect your loved one and yourself 
• 2/3: Some people may feel that talking about end of life communicates giving up. In fact, most couples report that sharing their deepest concerns, especially about end of life, brings them closer together and helps them feel less fear
• 3/3: It is hard to hide fears related to EOL. Not sharing your thoughts may only add to their concerns & sense of being alone. Being deeply honest w them shows courage & commitment & gives them the opportunity to talk w you in a way that may not possible w anyone else 

We look forward to you joining us at the next #gyncsm chat on Wednesday, December 8th at 8pmET when we’ll discuss "Surviving Holiday Stress". 

Wishing all a very Happy Thanksgiving. We are thankful for our moderators, supporters, and all participants. "Thanksgiving is also National Family Health History Day... Speaking of sharing and taking with relatives! #gyncsm" E. Bodnar

Dee

Resources

Her Cancer Diaries https://www.uchealth.org/today/cancer-diaries-novel-way-of-sharing-journey/

@CancerDotNet https://www.cancer.net/blog/2017-03/how-share-genetic-test-results-with-family

Death with Dignity https://deathwithdignity.org/learn/end-of-life-resources/

Talking to Family and Friends about Cancer and Cancer Risk- Nov 10 #gyncsm Chat

 

This month on Wednesday, November 10th, at 8pm ET, #gyncsm is pleased to have our very own health moderator, Dr Ann Becker-Schutte (@DrBeckerSchutte) as our guest to discus Talking to Family and Friends about Cancer and Cancer Risk.  

 

How we talk about our cancer with family and friends may change over time as we progress from newly diagnosed, to being in treatment, to survivorship. Those with a gyn cancer or high-risk diagnosis may respond differently to their loved ones' reactions. With genetic testing recommended for all women with ovarian cancer and endometrial cancer, how we share and discuss those results with loved ones is an important consideration. 

 

We invite you to join us as we discuss the following topics questions:

 

T1: After a diagnosis, telling family and friends can be overwhelming . What are some considerations for deciding what information to share, with whom to share it, and when? What are some tips for those early discussions?

T2: What are some ways to handle the variety of responses and reactions when sharing about one's cancer diagnosis, treatments, and/or experiences?

T3: What advice would you offer to friends and family when talking to their loved one about cancer? What have you found MOST helpful? What tends to be NOT helpful at all?

T4: Many of us struggle with how to ask for and accept help and support. How can we best communicate what we need to friends and family when feeling overwhelmed?

T5: For genetic testing, what are some considerations when it comes to sharing the results with family? Are there resources for how to reach out and for handling their reactions and questions?

T6: What are some tips and resources for guiding end of life discussions and planning with friends and family?

Feel free to check the Cancer.Net website for tips on communicating with your spouse/partner, child, and teen about your cancer. 

• Spouse/partner:
  https://www.cancer.net/coping-with-cancer/talking-with-family-and-friends/talking-about-cancer/talking-with-your-spouse-or-partner-about-cancer 
• Children: https://www.cancer.net/coping-with-cancer/talking-with-family-and-friends/talking-about-cancer/talking-with-children-about-cancer
• Teens: https://www.cancer.net/coping-with-cancer/talking-with-family-and-friends/talking-about-cancer/talking-with-teens-about-cancer

Christina and I look forward to having you join us.  

Dee 

#gyncsm Co-moderator

September 8, 2021 - 8th Anniversary Chat , Genetic Testing and Gyn Cancers

We were pleased to have Meg Farmer (@MegFarmerCGCMBA), Genetic Clinical Operations Director at My Gene Counsel (@MyGeneCounsel) join us on Wednesday September 8, 2021 at 8pm ET to discuss Genetic Testing and Gyn Cancers. 

Sixteen participants joined us for this important discussion. You may find analytics here and a transcript here. Resources may be found at the end of the post. 

Here is a summary of the responses to our topic questions. 

T1: The topic of genetics and cancer can quickly get confusing. What is genetic testing vs. genomic testing?

• Genetic (germline) testing looks for hereditary mutations linked with increased risk of cancer. Genomic (somatic) testing looks for mutations in the tumor/cancer that may be useful for targeted cancer treatment 
• Genetics are what is going on in ALL your cells ( often called germline testing). Genomic testing is specific to the tumor - it can be obtained through tissue or blood! 
• Study of genes and their roles in inheritance vs. the study of all of a person's genes (the genome), including interactions of those genes with each other and with the person's environment #gyncsm https://www.genome.gov/about-genomics/fact-sheets/Genetics-vs-Genomics 

T2a: Mutations in what genes are known to be associated with ovarian cancer?

• To start, mutations in many genes are linked with hereditary risk for ovarian cancer. Most people think of #BRCA1 and #BRCA2 first because mutations in these genes account for the most cases of hereditary ovarian cancer.  Other genes linked with hereditary ovarian cancer include #Lynchsyndrome genes, #BRIP1 , #RAD51C , #RAD51D , #PALB2 and more. Importantly not all genes are equal when it comes to level of risk and @NCCN guidelines for risk reducing options. 

T2b: Mutations in what genes are known to be associated with endometrial cancer?

• To start, mutations in multiple genes are linked with hereditary endometrial/uterine cancer. Mutations in #Lynchsyndrome genes (MLH1, MSH2, MSH6, PMS2, EPCAM) account for the most cases of hereditary endometrial cancer. Risk varies significantly by gene. Other genes linked with hereditary uterine cancer include #PTEN ( #CowdenSyndrome ) and #STK11 ( #PeutzJeghersSyndrome ). #POLD1 and others may be associated but research is ongoing. https://pubmed.ncbi.nlm.nih.gov/29428283/ 

T2c: Are mutations in any genes known to be associated with other gynecologic cancers?

•  Less commonly, but yes. For instance you can see #CervicalCancer in association with mutations in #STK11 ( #PeutzJeghersSyndrome ) and genes linked with #FanconiAnemia and #DyskeratosisCongenita . Other rare GYN tumors can also have a hereditary cause. 

T3a: What types of genetic testing are used to find hereditary reasons for gynecologic cancer?

• To start, in the past, #GeneticCounselors and doctors considered the cancers in a person/family and tested for the most likely condition first- like we've discussed. But sometimes that didn’t identify a cause, and it wasn't always possible to order additional tests. Now multigene panels that test several genes at once are more common. Number of genes included varies widely. Panels may also be focused (ex: only gyn ca genes) or broader. Results can be complicated but GCs and other tools can help https://www.nsgc.org/Policy-Research-and-Publications/Position-Statements/Position-Statements/Post/use-of-multi-gene-panel-tests
• Genetic counseling can be vital in the process. The science is moving fast and there is a lot to digest. You can search for one using this tool from NSGC https://findageneticcounselor.nsgc.org/  

T3b: Who is recommended to get genetic testing for hereditary gynecologic cancer?

• To start, according to the @NCCN , #GeneticTesting should automatically be considered for those with epithelial #ovariancancer or #endometrialcancer younger than 50. https://t.co/QVemXGk8Gu https://t.co/2pfMrwwNkR  #GeneticTesting should also be considered if we see following combinations of cancer in one person or branch of a family tree: colon/endometrial/ovarian/other GI cancers or breast/ovarian/prostate/pancreatic cancers. If you’re concerned about hereditary cancer risk based on this or other personal/family cancer history, a #GeneticCounselor can help determine whether genetic testing is appropriate, best person in family to test, and best test. 
• @asco has this guideline for testing women with an epithelial ovarian cancer dx - Germline and Somatic Tumor Testing in Epithelial Ovarian Cancer: ASCO Guideline https://ascopubs.org/doi/full/10.1200/JCO.19.02960 #gyncsm
• Every #ovariancancer patient should have genetic testing at the time of diagnosis.
• Or for patients with endometrial cancer who have abnormal MMR (mismatch repair genes) - genetic testing for Lynch syndrome may be recommended. 

T4a: Do different mutations appear in tumors (genomic testing) than may appear in genetic tests?

• Yes. All tumors have mutations. Most of these are only in the tumor (somatic) rather than there from birth and usually in all of a person’s cells (germline/hereditary). For every cancer type, there are genes in which we are most likely to see somatic mutations Just like multigene genetic tests are often used now, genomic tests usually test many genes at once too so oncologists have more info to work with when considering how a cancer is behaving and best treatment plans 

T4b: Is genetic testing ever recommended because of genomic test results?

• To start, yes. There can be clues in somatic test results that a person may actually have a hereditary mutation. For example, if a #BRCA mutation is seen in any tumor type, or if a mutation is seen at a higher level in a tumor than would be expected if just somatic. Your doctor or genetic counselor can help clarify and develop a plan for hereditary genetic testing if such clues come up in somatic testing. Check out this blog on the subject from @InformedDNA #gyncsm https://informeddna.com/somatic-vs-germline-testing/

T5: What are some of the benefits of genetic and genomic testing?

• To start, genomic (somatic) testing can help oncologists understand how a cancer behaves and potentially identify targeted treatments  #precisionmedicine Genetic (germline) testing can be helpful for those without cancer too if hereditary cancer is suspected in a family. If a mutation is identified, individualized plans can be made for early cancer detection, cancer risk reduction, and family planning.
• Concerns about #genetictesting , health insurance, life insurance, and other policy types are common. Check out this guide on protections and exceptions of the Genetic Info Non-Discrimination Act (GINA) #gyncsm https://www.jax.org/education-and-learning/clinical-and-continuing-education/ccep-non-cancer-resources/gina-overview#
• I think the importance of genetic testing after diagnosis is growing and growing - especially with newer treatments like immunotherapy. But all treatments are getting more targeted so knowing the genetic and genomic test results can be key to improved outcomes 
• Definitely a lot goes into the decision to get tested before or after diagnosis. That's where genetic counselors can be so valuable. There are also wonderful groups like @FacingOurRisk that can help you think through the legal/insurance/etc. issues and beyond. 

We are happy to have celebrated our 8th Anniversary as a Chat and Community during this chat. Thank you for everyone who has helped to support the #gyncsm community these past eight years. 

It is time again for our biennial survey. This survey helps Christina and I plan the coming year's chat topics and, along with our health moderators, provide you the best information in the best format. This link to the community survey will be open until Sept 22 https://www.surveymonkey.com/r/SGD3SDQ . Please take some time to fill out this five minute survey. Thanks!

Note there will be no #gyncsm chat in October. Save the date for our next chat Wed, November 10, 2021 at 8pmET when we’ll discuss “Talking to Family and Friends about Cancer and Cancer Risk”.

See you in November! 

Dee

Resources 

Fact Sheet - Genetics vs Genomics

https://www.genome.gov/about-genomics/fact-sheets/Genetics-vs-Genomics 

Who Should Be Concerned About Hereditary Cancer?

https://www.mygenecounsel.com/who-should-be-concerned-about-hereditary-cancer/

NCCN  Know What Your Doctors Know: Ovarian Cancer Part 3 – Genetic Testing

https://youtu.be/KDL96xMoles

ASCO guideline 

https://ascopubs.org/doi/full/10.1200/JCO.19.02960

Hereditary Cancer s in Gynecology ...

https://pubmed.ncbi.nlm.nih.gov/29428283/

Patient-Centered Cancer Care: Somatic vs Germline Testing and the Role of Genetic Counselors  https://informeddna.com/somatic-vs-germline-testing/

Genetic Testing and Gyn Cancer chat - Our 8th Anniversary Chat on the 8th!

 

We are pleased that Meg Farmer (@MegFarmerCGCMBA), Genetic Clinical Operations Director at My Gene Counsel (@MyGeneCounsel) will join us Wednesday September 8, 2021 at 8pm ET (7pm CT, 5pm PT) for our discussion of Genetic Testing and Gyn Cancers. 

We will discuss the difference between genetic and genomic testing, gene mutations associated with gyn cancers, germline and somatic testing for gynecologic cancers, recommended genetic/tumor  testing for gyn cancers, and how knowledge from the tests can help patients make treatment decisions.

Here's our topic questions:

T1: The topic of genetics and cancer can quickly get confusing. What is genetic testing vs. genomic testing?

T2a: Mutations in what genes are known to be associated with ovarian cancer?
T2b: Mutations in what genes are known to be associated with endometrial cancer?
T2c: Are mutations in any genes known to be associated with other gynecologic cancers?

T3a: What types of genetic testing are used to find hereditary reasons for gynecologic cancer?
T3b: Who is recommended to get genetic testing for hereditary gynecologic cancer?

T4a: Do different mutations appear in tumors (genomic testing) than may appear in genetic tests?
T4b: Is genetic testing ever recommended because of genomic test results?

T5: What are some of the benefits of genetic and genomic testing?

Our September chat will mark our 8th Anniversary as a chat and community. Has it really been 8 years? Seems like yesterday when Christina and I were emailing back and forth with Drs Dizon, Boulay, Markham and Becker-Schutte about starting a gyn cancer community similar to the #bcsm community. 

September also marks the time when we once again invite our community to take a survey. The survey helps Christina and I plan the coming year's chat topics and, along with our health moderators, provide you the best information in the best format. We will share the link to the survey in our after-chat blog post.

All September, which is Gynecologic Cancer Awareness Month (#GCAM), learn more about gyn cancers by following our Twitter posts and those of our supporters, @SGO_org, @IamCervivor and @ocrahope. 

We look forward to seeing you on the 8th. 

Dee and Christina

August 11, 2021 Cancer Myths

This month we came together to discuss Cancer Myths. Twenty-six participants joined us for this important discussion. You may find analytics here and a transcript here. 

Here is a sample of the responses to our topic questions. 

T1: For you, what makes something a cancer myth? Is it strictly false information or is it something more?

• I see the term "cancer myth" as a widely held belief about cancer. It could be true, false, misleading or anywhere along the spectrum. For me, it is a vague idea that I haven't really looked into the facts of
• I think of it as misinformation that for whatever reason has persisted through time.
• Sometimes people make generalizations ('cancer myths') about cancer, cancer treatments or cancer outcomes - but every cancer is different and every patient has an individual experience.
• I think of cancer myths as outdated information or false beliefs that people have regarding cancer.
• It may also be an assumption about the disease, or its treatments, that are taken for granted based up conventional wisdom, rather than evidence. When passed down by attendings to trainees, we called it #oncolore in my residency

T2: What are some cancer myths that you grew up with? What are some you have encountered as you've been impacted by cancer or worked with cancer patients? (re: causes/what happens during treatment/about emerging treatments/other)

• Thinking back on my dad's cancer, I remember people talking about this idea that once you have surgery and expose it to air, you've allowed the cancer to spread and the end comes more quickly
• People thinking there is a cure for cancer and it’s being hidden from us, sigh 😣🙄. Cancer isn’t one disease. People don’t realize it’s many diseases.
• “Cancer is a death sentence”, “Sugar fuels cancer”, “You are too young for cancer”, to name a few.
• I think “cancer = death sentence” is a belief/response that can be important to unpack and surround w/the individual facts at hand. Some cancers do have little progress - others certainly not as much as we would like - but there are ways to provide hope along w/info
• A cancer myth I still occasionally hear is "you can only inherit female cancer risks from mom" ... We all inherit DNA from both mom and dad, hereditary cancer risks included! Both sides of family health history are important #gyncsm #FamilyHealthHistory #GeneticsMyths
• Growing up - The myth that only old people got cancer. Most recently - The myth that my HPV cancer was directly my fault. #gyncsm

T3: What are some cancer myths that come up around nutrition/diet? Why do you think there is so much conflicting information in this area?

• the top myth to me is - People who have cancer shouldn't eat sugar, since sugar makes cancer to grow faster. All cells, including cancer cells, depend on blood sugar (glucose) for energy. Giving more sugar to cancer cells doesn't make them grow faster.
• And artificial sugars too. So no sweets for anyone lol. #gyncsm
• I think people want to believe that you have some control over whether you get cancer so thinking that if you eat healthy, limit sugar, and exercise, you will be safe which is not always true
• Agree - The risk of focusing on areas we can "control" is the inevitable opposite, that when something out of our control happens, there is shame/blame... Feels similar to fad diets and other trends that seem to just make people feel bad about their bodies

T4: Are there cancer myths specific to gynecologic cancers? Is there information you learned about a gyn cancer that you now know is wrong?

• Maybe not a myth, but there is a lack of basic female anatomy knowledge and also many do think the pap covers “everything down there” vs mainly cervical cancer.
• In the #sarcoma world, some women assume a PAP smear will catch their cancer. Not necessarily.
• There are absolutely myths to GYN cancers. One is that cervical cancer is the “easy” cancer, that it is just bad cells from a Pap test when in reality it is much, much more involved.
• that the Gardasil vaccine will cause fertility issues or other catastrophic problems.

T5: What are some tips for handling cancer myths and responding (or not) when you encounter them - both in-person and online?

• Tell people to fact check and look for information that is factual and not hearsay. As frustrating as it is at times, some people just can’t hear you.
• I try to educate in a calm manner to dispel the belief. Can be quite difficult with some people though. It’s important to remember you may not change their mind about some things and to stay composed
• Very situational - have to adapt to the person and setting. First step I find helpful is active listening and clarifying where the perspective/myth comes from.
• will ask the person to share the research that backs their statement. Then I share a reliable source or journal article that dispels the myth.
• I often give people studies or quote experts. But I try to be diplomatic, unless I think the person is making money or hurting people with myths.
•  Dispelling myths can take a lot of time and energy. And it is okay to not always be up for that. When we can interact one on one and ask questions IF they are open to a discussion that is where to start.
• Meet people where they’re at - sometimes that’s really hard. Sometimes they are not taught what we already know. Clarify and ask questions to understand. Have a conversation. Share your story and some reliable resources for them to check out.
• There is a ton of attention and research in health communication and combatting misinformation with ~everything~ going on...I look to experts in that space for ideas and approaches to build trust and communicate evidence clearly
• I get an alert from Pubmed on new research for #leiomyosarcoma, including gyn LMS. I read experts online & attend #sarcoma conferences when I can afford them. 

T6: What are your go-to sources for reliable information about cancer? For gynecologic cancers specifically?

• Resource | @theNCI is an important source of information and has this article addressing common cancer myths: https://www.cancer.gov/about-cancer/causes-prevention/risk/myths
• Resource | @cancerdotnet is doctor-approved cancer information from @ASCO, designed for patients  
• Resource | National Comprehensive Cancer Network ( @NCCN ) has patient versions of screening and treatment guidelines for many specific cancers
• For GYN Cancer, see the #gyncsm blog Resources page http://gyncsm.blogspot.com/p/resources_9.html and a good starting place is the Foundation for Women’s Cancer https://www.foundationforwomenscancer.org/
• @ocrahope (OCRA) 
• @MDAndersonNews  (MD Anderson)
• @sloan_kettering (Memorial Sloan Kettering Cancer Center) 
• @SGO_org  (SGO)
• @GYNCancer (Foundation for Womens Cancer)
• @IamCervivor ( I Am Cervivor) 
• Peer support - in person and online can be VITAL to fill in information gaps BUT you have to be careful and use these other sources and your doctor to verify information. I steer to groups like @smart_patients which have clear moderation vs. [unmoderated] FB groups.

We look forward to you joining us at the next #gyncsm chat on Wednesday, September 8, 2021 at 8pm ET when we’ll discuss Genetic Testing and Gyn Cancers. We’ll also be asking our participants to fill out a survey to help us improve the #gyncsm community. 

See you in September for Gyn Cancer Awareness Month! 

Dee and Christina